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[xyzzy]

why for example it is not on the list of organisations invited to give opinions to N.I.C.E when patently it would be in an ideal position

Potential stakeholders, unless they have been involved before when they are invited, need to register an interest.
http://www.nice.org.uk/getinvolved/sh/s ... regtop.jsp
Whether they count as a 'national patient and carer organisations that directly or indirectly represent the interests of people whose care is covered by the guideline ' I don't know.

lots and lots of info about how the guidelines are developed and who has a say.
http://www.nice.org.uk/getinvolved/get_involved.jsp
They have lay members of the various working parties and committees and anyone can apply . No vacancies on the diabetic committees at present.

Thanks Phoenix. So the question becomes why hasn't DCUK registered an interest or maybe it has never thought to do so? Personally I think it would be an excellent thing for it to do.

 

[borofergie]

If you feel that strongly about DCUK then why do you continue to post here, if I felt as you do I would not have anything to do with DCUK, personally

Really? I'm the opposite. I love to post on the pages of organizations that I disagree with. Rage against the machine and all that.(DCUK is not one of those, but I regularly comment on DUK's facebook page when thay are carb pushing or T2 bashing).

That's kinda the whole point of social media - it's a two way coversation.

 

[jopar]

If you check out the front page, at the bottom you will see that it says, DCUK is part of SiteFinders Net ltd and if you check out Sitefinders at company house, it's company no is 03283027 and Company Type,privately limited company, nature of business sic62090 - Other information technology service activities... If it was a 'not for profit' organisation the company type would be listed as PRI/LTD BY GUAR/NSC, which translate as Private, limited by guarantee, no share capital which means any profits made are kept internal to the company or shared amongst employee's...

If you check DCUK with company house, DCUK isn't listed as a company as it's not an company, it could be considered as being a department within Sitefinders!

Link to company house, wck2.companieshouse.gov.uk/80a721a0cd56844ee2102bd2842b46b7/wcframe?name=accessCompanyInfo Just type in Sitefinders into the search...

But going back to DCUK speaking up for us, well we can do that a lot better in other ways for ourselves, but I have noticed one major problem though, very few people know how to do this effectively... There are many avenues that go straight to the ones who makes the decisions, such as becoming a lay person committee member of a NICE Review, or joining your PCT Network group, which patients get a say/input on decisions the PCT make concerning our care!

Most of these would be ruled out to the DCUK/Sitefinders but not to the individual diabetic though..

 

[jopar]

Zyzz

And which bit of the criteria would DCUK says was their reason for being a stake holder! Not sure if the forum qualifies them for being 'indirect' care provider!

DCUK is part of an internet business, that's found a nice little way of generating money via the internet! The only thing it sales is advertising space, so the same company that has a similar website but for Dogs is able to speak up for the diabetic!

And I've looked at their dog website doesn't have a forum, that's coming soon! But it's fundamentally the same as this site, where upon they built a website concerning dogs, but being an individual who's quite knowledgeable about dogs, I would say that some of the information provided there is in league with how some information being given on diabetes is!

Here some say that NHS information is flawed! Over on the Dog website I would say information given by the KC is very flawed!

Personally because of the diversity of the company, I feel that they should stick to what they know best, and that is doing what they are already doing, providing information and place to talk...

 

[xyzzy]

And which bit of the criteria would DCUK says was their reason for being a stake holder! Not sure if the forum qualifies them for being 'indirect' care provider! ...

No I think the forum is the reason why DCUK could make a case why it's voice should be heard. Whether or not that is feasible or not is a separate question.

I really don't see why this forums opinions are anything to be ashamed about and it would do diabetes in this country the power of good to hear what real living diabetics think about the treatment they receive and how it could be bettered. Delivering that message through a nationally recognised pressure group i.e "the DCUK forum membership" is way more powerful than just delivering your message as an individual in my opinion. That's why pressure groups and lobbying are seen as a powerful way of getting things done.

Without wishing to sound critical Jo I still think you are confusing "business and profits" with "the message" they are two different things and can be viewed independently. So what if DCUK makes it money as an internet sales outlet. The business and profits bit of DCUK is enabling the message [the forum] the only difference between that and DUK is in their case "business and profit" is replaced by "sponsorship and donation". DUK have their message in just the same way but it gets heard whereas the DCUK message isn't. Not a good state of affairs in my opinion.

 

[lucylocket61]

I dont think that DCUK having profits is a problem in any way. They have to pay staff, they have to pay rent and they have to have profits to re-invest in new servers, website updates, video equipment etc.

It doesnt make them bad or their message sinister or irrelevant.

and why not have the same set up for dogs? why not? given the problems and misinformation around for dog owners, it is probably a very good thing.

Personally I see no difficulty in posting in a forum where I do not agree with everything said. Things develop and information changes in the light of new research etc. Challenging the status quo help to move information forward and test new ideas and research in the light of experience.

some of the most informative threads, for me, have been the ones where there are widely different stances upheld, challenging my understanding and extending my knowledge by making me ask myself questions and do further private research. If we all had to agree, there would be no point of a forum to exchange ideas. We would only need the rest of the site, and a support thread.

 

[noblehead]

People searching the internet for help, will come across DCUK see the video touting starchy carbs and think that is the route. There may be 'diets' on the home page but that is exactly what they are, diets, and not a way of eating that most diabetics can carry on with longterm.

Dawn, 'diet' covers every aspect of the foods we consume no matter what you eat and drink. As I've said throughout the thread, DCUK give multiple options for the reader to choose from and do advertise the forum both in the community pages and in their emails for people to join and seek advice.....should they choose, all our experiences on the forum are purely anecdotal and we are just people behind forum names, DCUK have to professional and base their advice on the current evidence available and not experiences from a small group of individual on a Internet forum.

 

[phoenix]

We don't know who people are on forums. We don't know the opinions of those who don't post. We don't know who is one person or multiple people( ie sock puppets, do you want a list of them from the past, I could name a few). We don't know if people are telling the truth.

I'll just to give one example that didn't happen on this forum but spanned at least 2 others. I suspect that others on here will recognise the details.
This lady was from the UK. She wrote about being a T2, she gave a lot of advice ,some dietary. She then became diagnosed as 1.5. She made lots of online 'friends ' from all over the world. Long story but she got pregnant with twins and maybe the lie became too difficult to sustain. She was then reported as dying but the babies on life support. Then someone started looking at dates etc. It was all a total fraud. A lot of her friends were very hurt.
Now, I hope the above example is rare but who knows ? Should a medical authority take note of her experiences and views?

The evidence from forums is anecdotal, anonymous and would rightly be ignored.

It is surely better to get involved in the public consultations that are often advertised in this forum, join up to diabetes voices as suggested in a post by Sid. An alternative is to set up forum meetings for like minded people. Many other forums have forum get togethers. From there you might be able to set up a credible pressure group... but it would take time and energy.

 

[jopar]

I remember that sad tale phoenix far from pleasant..

Personally I think sitefinders/dcuk are wise enough business people to know where not to go!

But we forget that in fact they have given members some backing where they are able, Benedict's e-petition anybody, now haven't dcuk/sitefinders put this together on behalf of T2's diabetics, to try to improve their access to test strips, it was able to do this for various reasons, doing so wouldn't compromise it's business (who want's to upset advertisers when they are your income) but also the government has the ability/software to validate every signature it receives!

And comparing dcuk to duk really doesn't work at all, as duk is a charity that answers to some strict regulations/rules to enable it to keep it's charity status... dcuk only has to answer to general business trading regulations/rules, which is based around don't attempt to fleece the taxman!

Lucy,

I shall expand on the dog forum in a separate thread in the 'have your say forum' rather than within this thread!

 

[xyzzy]

We don't know who people are on forums...

The problem with the existent public consultations route is I see no evidence that it has produced a lot of change and would attribute that in a large part to the fact it is just individuals trying to change things. From my experience generally individuals lack power to effect any real change whereas pressure groups and lobbying are known to be far more effective.

I take the point about identity but that's hardly an insurmountable problem if the community wanted to set up a correctly organised group. I realise the forum has a chequered history but you and other long term members assuming that a proportion of the current membership are operating under sock puppet accounts isn't a particularly helpful attitude in my opinion. Isn't that why DCUK has employed professional staff like Benedict & Giverny to deal with those kind of issues? At some point you have to trust that these people are doing their jobs. Recognising and learning from past problems is obviously a good thing but limiting future actions on things that happened in the past when the forum was in a far less mature state seems very self defeating.

Personally I think sitefinders/dcuk are wise enough business people to know where not to go!

Yes you may be right Jo but I do think its a wasted opportunity for all of us. Perhaps a tug on their heart strings might help by pointing out they are basing the success and marketing of the DCUK brand in quite a large part on this forum and the people who contribute to it. :lol:

And comparing dcuk to duk really doesn't work at all, as duk is a charity that answers to some strict regulations/rules to enable it to keep it's charity status... dcuk only has to answer to general business trading regulations/rules, which is based around don't attempt to fleece the taxman!

Yes and no Jo. Yes DUK is obviously more advanced in terms of its organisation and getting its message heard but many private business' get their voices heard too. Again for proof look at the list of organisations who do have a say regarding the N.I.C.E guidelines rewrite you will spot many private companies for example Astrazeneca UK Ltd and many more. Being a private company doesn't seem to rule out eligibility for these things.

 

[noblehead]

I take the point about identity but that's hardly an insurmountable problem if the community wanted to set up a correctly organised group.

100% agree :thumbup:

xyzzy you could lead from the front and try and get a group together from the forum who are very much like-minded and want to see some change, from your time on the forum you have actively encouraged other members to make a stand and speak out about how well a low-carb diet works in controlling diabetes......I can think of no one better to represent a group at meetings or campaign using media channels like Youtube etc. To help support your group you could enlist the help of your local hospital and ask The Diabetes and Endocrine Centre to express their views having trained their staff previously in low-carb diets, as some months have passed since they trained their staff I'm sure they will have some useful data to endorse the benefits of low/reduced carb diets.

Back to topic, in the 'Ethos and Forum Rules' it does state the following:

''2. Information is the opinion of posters - not our view
The Forum is an incredible place with tons of helpful information. However, it's worth remembering that sometimes messages may be misleading or incorrect. Although 99% of members are helpful, there are occasionally some 'bad apples'. Please discuss, debate and have fun - but remember to research before acting on any information''.


Whilst DCUK supports the forum it cannot verify the identity or advice/information that members provide, as said earlier what is written by members is anecdotal and unless members are willing to take matters further it will remain just that.